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Unregistered User
(12/29/02 7:26 am)
FMD Arizona
Hi Celeste!
I'm 45 years old and I live in Tucson, Arizona. I'm married and have 2 sons, ages 14 and 11. I'm a high school assistant principal in charge of athletics at a school of 1400 students grades 9 - 12. I've been in education for 21 years.
I started having daily headaches in February 2002 and they became progressively worse - lasting all day and nothing would help. I thought they were attributed to job related stress but on April 18th my secretary and our school nurse noticed that I was confused and stumbling around and my pupils were unequal and one eyelid was drooping and I was repeating myself so they rushed me to the emergency room. 5 hours later the doctor finally ordered an MRI and found bilateral coratid artery dissections with 2 aneurysms (one in the left and one in the right coratid arteries). The hospital was in shock and I was immediately admitted to ICU - no one knew what to do or how it happened but my headaches moved up to level 8, 9 and 10 and I was heavily sedated but still in so much pain. Finally 7 days later and after many MRI/MRA's they decided to operate and put a stent in the left aneurysm but were unable to get to the right side aneurysm so they left it alone. I spent another 5 days or so in ICU then 5 or so in the step down ICU and then a few more in a regular room before I was discharged to go home. I went home still suffering headaches but the neurosurgeon said I would have to live with the headaches as part of the FMD. I was scheduled for a follow-up MRI/MRA on the head for June 11th to check on the stent and to see if there was any growth in the right side aneurysm and then on June 12th I was to have an abdominal MRI/MRA to see if the FMD had affected my renal arteries. I'm extremely chlostrophobic so I had to be sedated for the MRI/MRA which was June 11th at 8 am. My husband and mother-in-law took me home to sleep it off. I woke up at 2 pm when the phone rang, it was my neurosurgeon who had just gotten a call from the radiologist. The MRI/MRA found FMD in the left vertebral artery and a 17mm by 8 mm aneurysm that wasn't there 6 weeks before and it was tissue paper thin and in a very critical place. My right verteral artery was basically shriveled up. I was scheduled for surgery the next day. He told me it wasn't good. My world had already turned upside down with the news in April and then again it got worse in June. I called my husband, then my parents(who live in Arkansas) and my in-laws(here in Tucson). I went to the hospital the next morning scared to death. The surgeon told us that the odds were 90% against me but if I didn't go through the surgery I for sure wouldn't make it. The procedure didn't go well and they were unsuccessful in trying to place a stent and my condition became critical. During the surgery, they had been on the phone to the Barrow's Neurological Institute in Phoenix, Arizona. The director there told them to get me as stable as possible and transport me to Phoenix where they would operate on me there. I was taken to ICU and the next day I was taken by ambulance to Phoenix and met with a team of 10 surgeons and on June 14th, Dr. Robert Spetzler(the director of Barrow's and one of the best brain surgeons in the world) performed a 7 hour surgery. He removed my C1 vertebra to gain access to the base of my brain for the crainiotomy and wrapped the aneurysm and clipped it with "Spetzler Aneurysm Clips" I spent several days in ICU and then in the neurosurgical unit at Barrow's before going home to Tucson. I went back to work the second week in August. I finally had the MRI/MRA on my abdominal arteries and found the FMD in the arteries to my liver, spleen, intestines and the renal arteries have started narrowing. I'm seeing a vascular surgeon for the abdominal FMD issues. I undergo MRI/MRA's every 4 to 6 months with the neurosurgeons and Dr. Spetzler will have me undergo some kind of testing once a year for the rest of my life (however long that may be).
I do still have daily all day headaches. They used to be level 3 but the last 5 days have been level 4's. I try to put up with them and keep a smile on my face and act like I'm okay but it gets harder and harder. I've gone to counseling to help me deal with the fear issues and that has helped and I know I have to just live my life but some days that is hard too - it's not like we can just forget about it. My sleep is affected sometimes - as you can see it is 11:25 pm here and I can't sleep so I check my e-mail or I'll read. Life hasn't been the same since April 18th for me. I'm looking into acupuncture. My doctors have told me to stay away from massage as my arteries are so bad that manipulation could be deadly for me and also to watch the herbal things as some may cause problems with my medications. I have family and friends all over who keep me in their prayers and my faith helps - there are those days that I do have my "pity party" and cry though but once I get a good cry out then I tell myself to get over it and I'm okay for awhile!!
I hate this disease - it has taken so much away from me but I also don't want to let it win or beat me. I am a realistic person though and I understand that there is no cure and no treatment and it will shorten my life - I have to keep that perspective in mind too.
It it a blessing to have found you and Jocee - please stay in touch.Joni

(11/3/03 9:58 pm)
Re: FMD Arizona
Miss Joni,

It's been close to two years... I just wondered if you're still on this board and how you're doing?

New FMD in Colorado

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